Archive for June, 2013

Mrs. G, Break down your wall…

Jim getting breakfast at a diner before our first day at the NIH.

Jim getting breakfast at a diner before our first day at the NIH.

I want to tell you what our NIH visit was like. To put the experience; the stress of waiting, the drive up and back, the silence, the testing that shows progression, the knowledge we are participating in something that will help (hopefully) many others…..there are many more emotions and thoughts to express than I can possibly convey. I wish I could somehow share with you the FEELINGS of visiting the NIH.

Security at the NIH.

Security at the NIH.

When you first step onto the CAMPUS of the NIH, it is a little intimidating. If you have ever been to a college campus, that is what it is like. But behind a guarded fence. Where you must first pass through inspection. An inspection that is more thorough than airport security. Then you find your building. And it is LARGE. Larger than most college campus buildings and so confusing that you will get lost. Many times. No matter how often you return. And this building has two gift shops and a book store and a barber shop. And a grand piano in the grand lobby. And two cafeterias. And valet parking (you must get validated.) And a coffee shop. And MANY banks of elevators.

But, no matter how grand the piano or the cafeterias or the lobby, you are still in a waiting room. Sitting in an uncomfortable chair. Watching a TV show you would normally not be watching. Eyeing others that are walking past you; wondering what they are there for as they are probably wondering the same about you. All the magazines have been thoroughly read. You have gazed upon the magnificent artwork and spied the beautiful fish tank. But none of these things keeps you from focusing on the reason you have driven many hours and organized childcare (THANK YOU AGAIN) and put yourself in this place of waiting.

Building 10 at the NIH.

Building 10 at the NIH.

Our doctor at the NIH is wonderful. He listens. He talks. He listens. He talks. It is a great experience on so many levels. If our country’s healthcare could follow the pattern I see when we are there, well, let’s just say many people would still be around and the complaints would fall drastically.

The tests Jim participated in were the exact same ones he did 2 years ago. This particular study is looking at inflamation in the brain of Alzheimer’s patients.This will allow them to see the changes that have taken place. In my mind, Jim has declined drastically. There are major differences and it is all much more noticeable. Our doctor told me there were some minor changes. I mean, 2 years ago he was still working full time. Two years ago he was only showing symptoms every couple of days. Now it is daily. Hourly really. Hmmm. How is THAT possible. I know he,(the doctor) sees much worse. I know much worse is coming our way. Believe me. I live, breathe, sleep, eat and dream of it. But I haven’t been able to plan effectively  for it.

Jim ready for his PIB test.

Jim ready for his PIB test.

So, Jim was scanned. He was poked. He was measured. He was tested. And he will continue the tests in August when we return to finish this round of the study. Then we will get some results.

In the meantime, I need to make a MAJOR decision on his driving. I have decided to relieve myself of some of that burden by having him tested by an organization that does such things. It will cost $400, but I suppose it would cost much more in the long run if I didn’t and something happened. I don’t want to make that decision all by myself. And I don’t have $400 to have him tested monthly. I am starting to understand how people lose everything when this disease happens to them. Financially we are just beginning and I can already see where we are headed. And it ain’t pretty.

Jim had a major decline when he lost his job. Then his brother died from Alzheimer’s Disease (the same week) and he had an even bigger decline. Then 3 months later his Dad passed away (from cancer) and there was another decline. I know when I tell him he shouldn’t drive anymore there will be another decline. And our family life will be turned upside down in so many ways. I think all of this will become even more real. For me. And for the kids. I know it is coming. Jim knows it is coming. I am so grateful for his positive attitude and his lack of anger and his natural kindness. Sometimes I wonder if it makes it even harder.

I am so sad. I am so, so sad. I have finally realized through our trip to Bethesda that I have distanced myself from Jim. I have pulled away trying to protect myself. My natural inclination when I am hurting is to pull away; to find other things to concentrate on and to put a wall up. When we were alone for two whole days, focusing not on baseball games or sightseeing, but on Jim and his health, I realized I am scared. I am lonely. I am mad. I am pulling away. I am trying to move forward while being held back and being held back is what is propelling me forward. I think Jim feels the same way. I don’t think he has put a wall up.I don’t think he is capable.  I think he is scared. I think he is sad. So sad. He loves me and he loves Frances and Brad more than anything. He is absolutely besieged with sadness at the thought of losing us…..or us losing him. This whole crappy story is just one sad emotion after another. I can not live like this for years and years. I can not raise my children in this kind of sadness for years and years. I will not break my spirit or my soul to this disease and this utter sadness. I WILL FIND A WAY TO WIN. I will raise money and awareness. I will speak when I am asked to speak. I will write when I can. I will give interviews whenever I am summoned. I will do whatever I can to give the NIH more money; to bring awareness to the masses; to give hope and spirit to those that are fighting the same battle. It is not easy. Honestly, it is sucking me dry sometimes. But I am a very STRONG and DETERMINED woman. I have found my calling. I have found my true purpose on this Earth.

Date night in Bethesda, Maryland.

Date night in Bethesda, Maryland.

We will return to the NIH in August. We will listen to the results. We will keep moving forward. We will cling to each other and we will gather the wagons and fight until the end. It is what we are wired to do. There is no alternative. I am so grateful that there are researchers that literally are working around the clock to help us find a cure. I am not a scientist in any way, shape or form. I wish I was. I cannot contribute that way. What I can do is share our story and help the scientists get funding and get support to continue the long hours they have already dedicated to this cause. I admire and I thank them. I thank you for reading. I thank my parents for listening. And my friends for helping and volunteering. It really does take a village.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

Another NIH visit

Albert E. Quote1.59.39 PM

We are headed up to the NIH (National Institute of Health)  in Bethesda, Maryland late tomorrow for some follow up testing from the diagnostic study Jim participated in 2 years ago.

When we go for these tests and this study, Jim goes through hours and hours of scans, questions, bloodwork, waiting and sitting. So do I. When we leave, we are exhausted and given nothing to bring home that will tell us any more than we already know. We are given no new drugs or treatments. Eventually the doctor is kind enough to send us a report that will let us know they believe Jim is in the early stages of what they are pretty sure is Alzheimer’s Disease. I believe last time they labeled it as Mild Cognitive Impairment.  I am a little anxious to see the changes they will note and if he is still considered to be in the same stage two years later.

You may ask why we would drive 3 1/2 hours, take off work, go through the hassle of finding someone to watch the kids (thank you!) to sit and get poked and prodded and scrutinized for two full days.

Because we believe that these studies will eventually help bring about more understanding of Alzheimer’s Disease and what causes it; specifically Younger Onset type. And if you are keeping track, this tends to run in Jim’s family and with two kids, we have been told each has a 50/50 shot of winning this genetic lottery. For those even more in tune  to this situation, you will understand that we have also been told that 1 of our two babies WILL develop AD, most likely around the age of 48. Let that sink in for a moment.

Yep, that is enough to make the effort and the sacrifice more than worth it. We are not alone. Others make sacrifices and participate not only in diagnostic studies but clinical trials as well. Partly to help find a cure and partly to hold onto belief that the drug they are being the lab rat for is the magic pill that will not only be the miracle drug for others, but for themselves as well. You just can’t imagine how desperate you become when you are put into a situation with no hope, no cure, no help, nothing but a strong will. Sometimes even the strongest of wills feels weak and unsustainable.

It is a terrible time for me to take off work. Not only do I not have any vacation time, but I am at the very end of my quarter and need to bring on board 1 more member and I will make goal. When I make goal, I get a bonus. If I get a bonus, it will make up for the fact that I am taking two days off without pay. Ahhhhh. The irony. So, I will be keeping my fingers crossed that tomorrow I can do in 1 day what I should be doing in  3.

A few positives from all of this: we are continuing to make a difference in the big picture. We have good friends that are helping with Brad. (Frances is with my parents). I have a job that is letting me take time off work. I have the opportunity to make up for the lost pay. We get to visit the NIH again and be part of this amazing process and work with an amazing doctor and team. Jim and I will get two days by ourselves. I get to drive through DC. Wait. That wasn’t a positive. I get to drive through DC late at night on the way there. Better. We will be able to get results to show how much has changed with Jim in two years by the most advanced technology in the world. I will get to share our journey with all of you.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (4)

Pineapple Anyone?

 

Jim and Brad, Spring 2007. Watching Grandaddy play softball.

Jim and Brad, Spring 2007. Watching Grandaddy play softball.

When you have a spouse that has Alzheimer’s Disease, at some point you become a very bad “parent”.  The very thing you read articles about when you are a young, inexperienced new Mom or Dad that you swear you will never do….assume that your precious angles did something without having the proof.

You know how it is; there is always that one kid that always gets in trouble and is always being bad.  So, when something happens, you ASSUME it is them that did it.  Something gets broken, it was them.  Other kids start misbehaving, it must be the influence of that rotten kid.

Our 9 year old son has figured out that Daddy won’t always remember what is going on AND he has figured out that I, yes, perfect me, will probably believe anyone else in the world at this point before I believe Jim. Do you know how hard it is to read that in black and white?  There are so many things I am ashamed of these days, but unfortunately, the truth hurts.

Recently Brad came upstairs to talk to me while I was getting ready for work.  I casually asked him if he had eaten his fruit with breakfast.  He said he had eaten all of his pineapple.  No reason to doubt him because my wonderful, adorable son would NEVER lie about eating his fruit, right?

Jim comes up a few minutes later and asks Brad about eating his pineapple.  Brad says he did, without even blinking a lash.  Jim informs him that he did NOT eat his pineapple and needs to come down stairs to eat it.  Jim claims he didn’t even make any yet for him.  Hmmmm.  This is that moment where a rational thinking, normal wife would immediately agree with her husband, the father, and reprimand that child for telling a lie.  Not me.  No, I have a husband that doesn’t always remember a question he just asked me let alone the answer I gave him, so I immediately choose to side with our son. I  inform Jim that Brad did indeed eat his pineapple and he probably doesn’t remember fixing it for him.  Like I would know since I haven’t even made it downstairs yet.

Jim sulks away and I start digressing into a darker place, realizing that Jim must be having a bad day and that I need to get out the door for work and honestly, that is the last thing I feel up to doing.  A tiny trickle of tightness starts in my chest but I push it out of my mind and keep getting ready.  What I really want to do is change the course of this day, change my life, change the fact that Jim cannot remember fixing Brad pineapple and can’t be a man and take charge of the situation and control the conversation with our 9 year old son! What I really want to do is scream.  Scream at the top of my lungs that Jim needs to take over and make Brad eat the damn pineapple and he needs to punish him for lying. But, deep in the back of my brain I know.  I know that he won’t do anything and it will be me that has to take over, to yell, to punish, to once again take control over the situation and turn into mean, bitchy mom that is always yelling and complaining and telling everyone what to do all the time.

A short bit later, Jim comes back upstairs and asks Brad if he ate his pineapple, where is the bowl?  Hmmmmm again.  Jim seems to be with it today.  Could Brad have LIED to me?  He wouldn’t do that, would he?  My golden rule with the kids is to not take advantage of Jims’ situation. I have gone over and over this with them both and threatened them within an inch of their lives on this subject.

I turn to Brad one last time and ask him again if he ate his pineapple.  At this point, can you believe we are having a 10 minute conversation and heated debate about eating pineapple? Like this is the most important thing that could possibly be going on in our lives right now and we have nothing else to do.

Brad slowly looks at me with his big, beautiful eyes and tells me “oh yeah, I don’t think I did have any.  I forgot”

Bullshit.  He knew the whole time.  And I snap.  I snap because I am mad at my kid.  I snap because I am REALLY mad at myself for not believing Jim and everything that symbolizes in our marriage and in our home. Which makes me even more disappointed in Brad for making me choose him over Jim and breaking my own golden rule.

Then, I must yell, and scream and punish Brad.  Which is really like punishing myself.

I swallow my pride but not my tears and apologize to Jim for not believing him.  I don’t feel like I can handle any more. When will this nightmare be over?  Can I please just go back to bed and sleep until I have a new life?  Or at least until I can feel like I can get myself together? My head feels like it is spinning and on the verge of exploding.

And then Jim puts his arms around me and tells me what a great mom I am and how much he loves me. He tells me it is OK that I snapped.  It is OK that I didn’t believe him.  It is OK. Which actually makes me feel even worse because even with this wretched disease taking over his mind, it is still so obvious;  Jim is and always has been a much better person than I could ever hope to be.

I look at the clock and it is just 8:15 am. I was supposed to be working 15 minutes ago.

So, I pull myself together (as much as possible at that moment), give Brad a hug and tell him I love him and that I want him to have a great day at school.  Inside I feel empty, like a huge black hole has taken over where my heart was.  I need something, but I can’t put my finger on it.  As I watch Jim and Brad walking down the sidewalk to school, I feel the tears starting to come.  But I can’t have the luxury of a good cry at this point; I have already put on my mascara and I am now officially 20 minutes late for work. How much worse would our situation be if I lost my job?

Without thinking, I start my workday and start the motions that will carry me through until I can reclaim my tormented soul.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Thunderstorms and Clouds Galore

 

Family camp in MA. 2010. We were in the very early thoughts of this disease.

Family camp in MA. 2010. We were in the very early thoughts of this disease.

In keeping with the theme of filling everyone in on where Jim seems to be with this super awesome disease…

Last week there was a really bad wind and rainstorm heading our way. We had hours of notification from the media. When it was getting closer, I was finally home from work and casually told Jim we needed to get the yard ready. He took down the flag and the picnic table umbrella. He diligently moved hanging baskets and organized the patio chairs the kids had scattered about the backyard. Since winds were expected to be quite strong, it appears he moved more than I anticipated.

After the storm blew through we were so grateful to still have power, as many in our area didn’t. Jim decided he would go ahead and put a few things back that he had taken down. Evidently, this included the downspout from our gutter to our rain barrel. When I heard him mention he needed to go put the downspout back up, I thought I had either heard him wrong or misunderstood.

No, he meant the downspout that could have possibly blown away in the storm. After my initial shock and utter disbelief, I realized it was just comical. Who removes a downspout BEFORE a rainstorm?

Those of you reading this that are or have lived with someone with dementia completely get this and will see the humor, feel the frustration and sympathize with the progression of the disease on my very well intended husband.

Those of you that are reading this blog in an effort to become educated, here is your lesson for the day: people with Alzheimer’s Disease will be rational and with it one day or even one hour. The next day or the next hour they will decide that a downspout will blow away in a severe thunderstorm and it will seem completely rational and normal and necessary to take it down before the storm comes. There is no need to argue. Just move on. (which is sooooo much harder than you could possibly imagine in the finite moment you are living in)

I love my husband a great deal. It is a good thing I do or else I would really feel trapped and see no need for pushing forward. If you are going through this fog with me, I applaud you. If you are doing it and feeling trapped or like you can’t do it one more day, I am sending you the strength to preserver. It will get better! Right?  I am afraid it will get much worse for us before it gets better. Isn’t there an answer somewhere, somehow to end this maddening life? If I am smart enough or savvy enough or strong enough……

Can you for just a moment imagine the day to day life of someone that knows life is going to suck so much more than it already does before you can even hope for it to get better? Does it get better after going through all of this? How can you ever be truly happy again? How can you ever feel like you can relax and plan for a future?  I read so many stories and speak with so many that have dealt with all of this and I really don’t see much in the way of happiness and joy and yippees. I know life isn’t supposed to be all smiles and sunshine, but wouldn’t it be nice to have some of those mixed in with the constant pounding of storms and dark clouds?

Sometimes I just don’t know what I am going to do or how I am going to do it. Then, magically, an angel or two appear for just the right thing. A day at the beach. A bike ride. Help with our Alaska trip. Help with the kids. Laughter that brings tears to my eyes. Joy that fills my soul as I watch Frances and Brad sing together. Bittersweet memories as I see Jim being the wonderful Father that he is.

I am not going to sugarcoat this: Alzheimer’s completely sucks. For so many reasons. It is not just about misplacing keys or forgetting someone’s name. That is waaaayyyyy down our list of symptoms at this point in the game. It is the loss of a person’s complete personality and their abilities to participate in the mundane tasks of family life. If you married someone for their looks, then this disease is the one for you. If you married someone for their mind and their abilities to co-parent and participate in life, Alzheimer’s will tear you apart bit by bit. If you need your partner to make you feel special and loved and keep you stimulated intellectually, you will become very isolated and lonely.

I married a man that made me complete. I have a lot of faults. I don’t deny them although I do try to improve them. With Jim, I was a much better person. I became a better Mom because of his patience and his ability to let me be me and circle back around during stressful times. I became a better friend because he never, not once, complained I spent too much time with my girlfriends and even encouraged time with them knowing it made me happy. I became a better daughter because he taught me how important family was and to not take it for granted.

I miss the Jim that has made me a stronger, more independent and better person. I sometimes wonder how I will get through the upcoming years. How will I take care of him, the kids, the house, myself….how will I financially be able to do this? How will I emotionally be able to do this? Which one will get me first? The finances or the emotional toll?

I wish I had my rock to talk to about this and to give me the different perspective and support I have had for the past 16 years. Even though he is still here with me, he isn’t.

By the way, we gave Jim an electric razor and a new weed whacker for Father’s Day. (see previous posts to understand the meaning of these gifts.) Let’s hope that he can utilize both. Now I will work on a better downspout that can not possibly blow away in a thunderstorm.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

The Time is NOW!

 

Jim and Brad in 2006. This was before we knew we would be traveling this road.

Jim and Brad in 2006. This was before we knew we would be traveling this road.

Many of you have written and shared your stories. I have cried reading the heartbreak and the sadness that bestows so many of us.  I am so glad you write to share your stories so I know I am not alone. I know my words help you. I know that sharing my story is making a difference.

I also want to make a difference for those that have no clue what it is like to live with someone with Alzheimer’s Disease or any form of dementia.

I am often asked, “Where is Jim in the progression of the disease?” That is just as tricky to answer as the question of when was he diagnosed.

A couple of days ago we met with Representative Scott Rigell. It was a very good meeting. He gave us a full 30 minutes. He listened. I talked. He talked. Jim sat and agreed when he should and nodded when he should. I know this is so hard on him, but he doesn’t complain and he doesn’t mope around feeling sorry for himself.

As you can imagine, getting ready to meet with our representative entailed picking out a shirt and tie for Jim.

About 6 months ago, we attended a funeral for our mailman. Jim had trouble with his tie, but he eventually tied it and wore it to the funeral.

Three days ago I put his tie around my neck, tied the knot, and handed it back to wear for our very important meeting with Congressman Rigell. As I was passing the tie over itself, I was twisting inside to match the twisting of the silky fabric. All the while trying not to show it to Jim or the kids. It took me a couple of times and I was trying so hard to concentrate on the task at hand and not the fact that my husband can no longer do a tie by himself.

As I mentioned in a recent post,  there were places he had missed shaving, claiming that if he shaved any closer he would cut himself.

Sometimes I confide in acquaintances and friends of the little things Jim does that are driving me crazy and that “aren’t right”.

When I tell them something like, “Jim couldn’t tie his tie today.” And then they reply,”Oh, well Stan (their husband) doesn’t do that either.”

Really?  Your husband doesn’t know not to put cans of tuna in the refrigerator? Your husband doesn’t know to put the paper in the recycling bin? Your husband doesn’t know how to tell if the dishes in the dishwasher or clean or not?

The thing is, I know when they say these things to me they are trying to make me feel better. Like, “it’s ok. My husband is a complete goofball too.”

But it doesn’t make me feel better. It makes me feel like my concerns and my complaints aren’t valid.  I KNOW my husband. I KNOW what he was capable of doing. He could tie a tie blindfolded. He could multi task. He could remember a schedule and not get lost driving to and from a place he had been 5 times already. Do not tell me that your husband can’t remember to take out the garbage either. Guess what? My husband could. And that is why I married him. Jim was an amazing man that made me a better woman. I am not complaining about him as a husband or as a person. I am lamenting the loss of the person that COULD do those things and did those things. That is why I am upset. So what if he can’t speak French or play the piano. Guess what? He never could. But he did know how to paint the house and he did know how to organize a home and knew how to switch out an electrical socket. Please stop invalidating my loss by telling me your husband doesn’t do those things either. Your husband never does because he either can’t or won’t. My husband doesn’t do these things because he can’t anymore. It is a symptom of where he is in the progression of this horrific disease and each time I recognize that he isn’t able to be his old self, it shows the continuous movement of the disease forward on his mind.

I am sorry that your husband doesn’t do the dishes or help with laundry. I married a man that did. I hate the disease that is keeping my husband from being able to do those things still.

I share his decline not to put him down or show him in a bad light. I do this to help others. To educate. It is time we all stop whispering about what it is REALLY like. There is no shame in not being able to remember a conversation you had 5 minutes ago. The shame lies with those that try to pretend that nothing is wrong. When you do that, change doesn’t come and nothing gets done to help those that will travel this road in the days, months and years ahead.

Speak up. Share your stories. Contact your elected officials and tell them they need to support more research funding. If you don’t, NOTHING will be done.

People used to whisper when they spoke of cancer because there wasn’t a cure. Now they slap a bumper sticker on their car proudly acknowledging they are a supporter or a survivor. We need to do the same for Alzheimer’s Disease and other dementias. Until we do, there will still be whispering and embarrassments and cover-ups.

Speak up and speak out. There are too many of us that share this feeling and this long, long path of HELL for nothing to be changing or to be done. We need more funding for research. We need to end the stigma. We need to change the view of memory loss and make it something that the average person cares about, just like they do AIDS/HIV, Heart Disease and Diabetes.

Do not misunderstand me. I am VERY appreciative of the fact we have provided money for cancer research and heart disease research. That has saved the lives of people I care deeply about. But the amount spent on other killers is not proportionate to the amount spent on Alzheimer’s Disease. I just don’t understand why. And I don’t understand why more people aren’t doing something about it.

It is time my friends. The time is NOW.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

My Facade…

This is me attending a recent work event. Don't I look like I have no care in the world?

This is me attending a recent work event. Don’t I look like I have no care in the world?

I am a facade. Standing in front of the world with my hair curled, makeup on and put together outfit. I look like a woman with a career. A woman with the perfect life. I can see it sometimes…how envious those that don’t know are of me. How ironic. But I am a liar. It is a farce to everyone I meet….

I feel I am constantly on the verge of a nervous breakdown. I am one tiny slip up away from letting it all crumble down around me. I am one brick removed away from my protective wall from running into a dark forest and never returning.

I am not who I purport to be in my work get-up and my strong presence in meetings and networking events and school events and gatherings of any kind. I seem so together and strong and unbreakable. It is funny how putting on the right outfit, sliding on the right bracelet and earrings and necklace and heels can almost make it seem as if you don’t have this second life you are surrounded by. It is so surreal; as I am being one person, I can feel the other person that is desperate and scared and lonely watching and shaking her head in amazement.

I am not just one person. I am not really two people. I am multiple people. I am the Karen that shows up for work each day, trying desperately to keep her job.

I am Mom. (and that my friends entails a whole other list of who I am)  I am a researcher for new drugs, clinical trials and articles for Jim. I am an advocate for more research funding and awareness. I am a friend. I am a neighbor. I am a softball and baseball Mom (this is different than just being a Mom). I am a daughter. I am a sister. I am an aunt. I am a housekeeper, cook, accountant, decision maker, fundraiser, jogger, schedule keeper and blogger. I know many of you assume these roles on a daily basis. Some of you may be single parents and you are just shaking your head at me. Silly girl. You ain’t seen nothing yet…..

I know. I know and what can I do?

Yesterday we were driving to my nephew’s high school graduation. There was a storm blowing through and it would have been so easy to just not go.It was a 4 hour drive to my parents and then another hour to the ceremony. No one would blame us for not showing up, right?

I don’t want to be that person. I don’t want to be the person that takes any excuse to get out of something that might be a little demanding or a little extra effort. I have an awesome nephew and I am glad we were there to help him celebrate such a momentous occasion. I have every hope and desire to keep that commitment to other things that are important in my life. But I have noticed as Jim progresses, my list of things that are important seem to change. Almost daily.

As I was driving down, I looked over at Jim for the first time. We had been busy packing and getting things in order before leaving and I hadn’t REALLY looked at him. So, I looked over and noticed that he hadn’t shaved. Hmmmm. Please remember, Senior Master Sergeant in the Air Force……

“Jim, did you shave this morning?”

“Yes.”

“Hmmmm. Ok.”

Then I look again and I see that he has shaven. But he has missed most of his chin and parts above his lip and most of one side. My heart breaks. I have read enough articles. I know what is coming. I know one day I will have to shave for him. I know I will have to put the toothpaste on his toothbrush and I will have to dress him and bathe him.

Looking over and seeing his sporadically shaven face reminded me of what is to come. On our way to such a joyous, exciting occasion, I am forced to remember what is really going on. There it is.

So many come up to me and tell me how good Jim looks. I don’t think so. I think he has aged exponentially. He has lost weight and doesn’t look like MY JIM.

Alzheimer’s doesn’t affect your physical presence for quite a while. It only messes up the mind. So, someone can look “normal” and at the same time be anything but.

So, I think I look normal but inside I am falling apart. The same for Jim. He looks like a guy in shape and ready to take on the world. If he could only figure out where his glasses are to read that book that he put somewhere…

 

posted by Karen in Uncategorized and have Comments (11)

My Promises

 

Frances and Brad 2006

Frances and Brad 2006

TO FRANCES AND BRAD, MY BEAUTIFUL, LOVING, INTELLIGENT CHILDREN:

My promises to you:

I promise to try to stay sane through this whole long process. Sometimes I don’t feel like I will be able to, but when I am with you, I know I can.

I promise to love you with all of my heart. Loving someone doesn’t mean giving them ice cream and chocolate every day.

I promise to love your Dad too, even when he makes me want to pull my hair out and go screaming out the door.

I promise not to share too much of the burdens I face daily with you.  You are only 9 and 12.  It is not your load, it is mine.

I promise to be honest with you.  Please don’t ask me if Daddy is going to die.  We are all going to die one day; we just think we know a better time frame for him.

I promise to try my very best not to take my frustrations, anger, bitterness and loneliness out on you.  I know I must seem moody or you must feel like you are walking on eggshells sometimes. I am sorry. I feel that way too.

I promise when I say I am sorry, I mean it. More than you can ever imagine.

I promise to share with you what is going on.  I am sorry I cannot tell you everything.    I am really trying to be open with you, yet at the same time shield you from what life is throwing our way. I am working on a balance here.

I promise you this horrible experience is going to make you both great contributors to our world and will one day give you strength and courage your friends will not comprehend. This is based on the notion you will both accept the challenge to look at our life as a chance to grow as young adults and not use it as an excuse for life’s misfortunes.

I promise to try my very best to keep focused on the bigger picture: Being a good Mom, Wife and Homemaker doesn’t mean the house must remain dust free and clutter free each and every moment. But please, please try to keep your rooms clean.  As we go down this road, I will not be able to stay on you about the little things, or even the big things.  All of life’s lessons I am trying to cram in now will have to come back to you as needed. And don’t forget to brush your teeth, eat your fruits and veggies and get a good night’s rest.

I promise I will use all of my energy and will power to stay here, in the now and not get caught up in what lies ahead.  None of us really know what lies ahead.  We have been told what might be coming our way, but who really knows for sure?  I know I sometimes seem too busy for listening about your day at school or coming to sit and watch a game or dance around the living room like we used to.  I miss those things just as much as you do.

I promise to provide food, shelter and lots of love to you both.  The love will remain unconditional.  I can’t guarantee how fabulous the shelter part will be, but we will be TOGETHER. And the food, well, there is a reason I am trying to teach you to cook…..

I promise to work very hard to support our family and provide the things mentioned above, but not so hard I miss you growing up.

I promise to try really, really hard to keep a positive attitude.

I promise I will teach you to do your own laundry.  You both already know how to clean bathrooms, dust, do the dishes and mow the grass.  I will need your help and one day, not now, you will be glad you helped me so I didn’t have a complete breakdown. (keeping my fingers crossed on that one.)

I promise I will make every effort not to make you grow up too fast.  You are in a situation that none of your friends are in.  I know you want to fit in and not be different.  We are different.  But, we will use our difference for a greater good, and at the same time, try to remain “normal”.

I promise, as Dad progresses, to not use you as a Dad-sitter.

I promise to do my very best to show you how happy I am that I am your Mom.  When life is hectic and you need me to help with homework, fix dinner, wash your uniform for the game tomorrow, drive you to a party; remember my promise to teach you to do many of those things yourself. I do love being your Mom, but part of my job as your Mom is to teach you to be self sufficient.

I promise to smile and show you how much I love our life, our family, our home. There are days that this will be very difficult for me.

I promise you both that I will keep fighting for more funding for research and that I will not stop fighting until there is a cure for Alzheimer’s Disease.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comment (1)